The story of a father's battle with his daughter's battle with Autism

21 Grams

21 grams. This is the purported “weight of the soul,” popularized by those seeking scientific evidence that we are built of more than carbon and oxygen. It is fueled by outdated research, which suggests the body loses a small but measurable amount of weight at the moment of death. I’m not sure whether these results are methodically sound or even accurate. They neither validate nor refute my belief, as I look at my daughter and see at least 21 grams of something unexplainable.

The nuances are discernable from birth. Each child is endowed with a distinct personality, often ranging in similarity to their parents, but with a subtle quality all their own. As they grow, the symptoms of this existence begin to erode as social norms and a preoccupation with acceptance begin to wear away at the edges of individuality. Sometimes, I catch myself in this battle between youthful exuberance and acceptable behavior. I may see a high ceiling at work and subdue the urge to jump and touch it. I sometimes have to rock my leg to focus and keep from drifting into thoughts of art, music, or video games. Other times, it’s a fleeting opportunity to show kindness to another person, missed only because I took the opportunity to pause and wonder if I would appear strange.

In many individuals with special needs, these battles seem much more one-sided. Cailyn shows no inhibition when she has an urge to jump in the store. Her excited scream doesn’t have a separate volume setting for a quiet restaurant. She clumsily sprints around the block with her head down, arms waving, and is repeatedly distracted by oddly shaped leaves on the ground. Society tends to turn up their noses at this atypical behavior. I’ve even been guilty of feeling the embarrassment of being the center of the(sometimes imagined) disgust of others. Lately, however, I’ve taken on new emotions.

I feel an overwhelming sense of pride that I “get” her. Although Cailyn cannot always communicate her inner thoughts and feelings, I’ve watched her grow. I know her quirks and love them in a way most individuals will never understand. I love how visibly excited she gets over the most simplistic things, not knowing enough to suppress emotion for the sake of looking cool. I love that she runs, not for competition or exercise, but for the joy of letting out her energy and feeling the wind blow through her hair. I love that she sees the world in a fresh way, with lenses that appreciate each subtle detail of intriguing and exciting things. I sometimes wonder if Autism really creates traits or if it simply removes the filter, allowing a more “pure” image of an individual to be seen. I envy that she lives in such a carefree, joyful world and it makes me sad that so many others will be too uncomfortable to appreciate her beautiful uniqueness.

This battle with my daughter’s battle with Autism sometimes consumes me. I struggle with thoughts of regret, despair, and fear for Cailyn’s future. I’ve looked at her as afflicted for so long, that the mindset begins to taint my interaction with her. Although it sounds cliché, the more I experience the stress of a “typical” life, the more I become convinced that she has been given a gift. My purpose therefore, is not to force her to hide it for the sake of normalcy, but to teach her to use her gift to impact others and function in a world that doesn’t understand her the way I do…a world that has to be held to a flame to rediscover the 21 grams of unbridled childhood they painted over.

I know of the existence of the soul, not because a scale told me it leaves the body on death. It’s something I see every day; a quality for which chromosome rearrangement, mutation, and millennia of trial and error cannot fully account. It’s a moment of understanding in Cailyn’s eyes when we look at each other and I tell her “I love you.” It’s the suddenly confident smile on her face when I applaud an achievement. It’s the metaphysical, spiritual connection I feel when I pick my sleeping girl up, hold her heart to mine, and take her to her bed. These moments bring calm to all turmoil, speaking to my spirit that I was somehow meant for her and she for I.

I never know what challenges and emotions the next day will bring but I’m thankful for the opportunity to be the steward of such a beautiful soul. I wouldn’t have entrusted her 21 grams with anyone else.

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2 thoughts on “21 Grams”

Well done Craig as I have told Amber in the past I wonder if sometimes the Autistic are not the Normal ones and we are the Handicapped. They have no need to respond or react to any stimulus that may be brought to the fore. To me it is a clear picture of, “Being in the World and yet not of it.” Craig may the Lord continue to Bless you and Amber together and separately. You have a very Gifted family in so many ways. Continue, as I know you will, to use them for His Glory and in Due time He will lift you up!!!

Again, I sit in wonder at what goes on in that head of yours. I usually read something and move on. Not with your blog. I sit and ponder what you’ve written and thank God you share your life and struggles and fears with us. It bolsters my faith that God is in control even though we are full of doubt and even unbelief. Thanks again for sharing.